Friedbrain

Wow, interesting! I emailed a friend to ask her to download it for me. I'd love to read it. I, too, have blood pressure regulation problems, and numerous symptoms that made neuros initially think I had MS. I had MRIs yearly for about three or four years, and all were negative (as were the two lumbar punctures I had initially, when my health first fell apart 9 ys ago). They finally dismissed the possible MS diagnosis and went with the "you're a mystery" diagnosis. I have numerous autoimmune antibodies. I've been on steroids (cortef) for about 8.5 ys; my new endo wants me to go off them and see how I do, whereas my famdoc thinks it's a logical possibility that the cortef has been helping prevent peripheral/central symptoms of inflammation over the years and that going off the cortef (without another anti inflammatory in its place) is a baaaad idea. I reduced the cortef last month, and have been having periodic spells of difficulty urinating (when I was in the hospital during my initial crisis, I couldn't at ALL, so it would...again....seem logical that it's connected). Interesting that others in this group have overlapping (inflammatory/blood pressure regulation/MS-like) symptoms in common.

Brethor9, I want your doc! That's exactly what I think. About 18 ys ago, my shaking if I went too long was diagnosed as reactive hypoglycemia-my glucose levels didn't drop to abnormally low levels but I had symptoms. Then, about 14 ys ago (after my first son was born), I started crashing hard (as in falling asleep on the floor) after eating high carb meals. After a wasted year that I pretty much slept through (not a single doc could help; and my male Obgyn-I went to him because I was also having multple ovarian cysts and thought it was all hormone related-even patted me on the head and told me that it was normal for females to feel tired!), I put some things together to realize I was reacting to carbs, and started on a low-carb diet. Even being careful with my diet, I can still get tired (and shaky after not eating, which seems to be unrelated to what I ate earlier). If I eat a cookie or something solid carb now? Oooh boy, tachycardia! And crash, boom. Am I more sensitive to the sugars, or is it worse? My sons make fun of it jokingly, that if they want to be left alone, they want to give me a cookie so that I'll fall asleep on them :)I I did have a fasting insulin level one time, and it was like zero or something. Below the "normal" range, but I couldn't find anything on what it might mean. Maybe nothing. Or maybe my body is too "on/off" with little in between, swinging me like an amusement park ride hormonally....? A doc wanted me to take an ITT but I have a seizure disorder and the lab wouldn't do it (and I didn't want to do it, either, so that was that).

It makes sense to take my bp cuff with me in the car when I go work out next time and then measure if afterward (in the car) to see what's going on. The more data the better, always! I, too, have had the very low pulse pressure (in the middle of the night), which is maybe a sign of shock (from unknown cause), resulting in adrenaline rush, maybe overshooting and/or overresponding with the tachycardia and shakes? katT, while my episodes were usually nocturnal, one time it happened during the daytime and the shaking did not stop-my fingers were numb, the docs were out to lunch, and the medcheck told my friend to take me to the ER. The ER loaded me up with enough ativan that the ceiling was spinning in a delightfully pleasant way (er, can you say loopy?) and sent me home. So when I induced that shaking episode above, I was pretty sure I wasn't going to die (and that going to the ER was worthless) which is why I was able to sit through it. But still, it's disconcerting never knowing if and for how long I'll be stranded somewhere because of these spells. If I could figure out how to prevent them completely (or know what to do when they happen in public like this), that would help so much!

I have a question about what's causing my dizziness *after* I work out. It's been going on for about two years now. I am fine DURING the workouts, but afterward, in the locker room or in the car, I start getting dizzy. Adding 2x electrolyte packets to my water during the workouts helped; I was able to experimentally induce a REALLY bad episode by leaving out the electrolytes (sodium?) when I was on a holter monitor, thinking it would help the cardio figure out what was wrong. I'd gotten in the car and then started feeling dizzy, then tachycardia, and then all-over body shaking. Dh brought salted peanuts and electrolyte packets to me (I couldn't drive to get home) and sat it out until I calmed down. Long story short, cardio just said it was dysautonomia and to salt load..... Anyway, that's the backstory. Even WITH the 2x electrolyte packet in my water (actually, today, I drank 2x w/ water on the way to work out, and another 2x packet with water during, the first time I've worked out in a long time), I still had the same problem: got into my car and felt relaxed, but then my head started spinning a bit and I had to sit there to make sure I could drive home. So........why does this happen? I'm wondering if it's that my heart doesn't slow down in comparison with my breathing. Would that make sense? Is there something else I can do to reduce the likelihood of this happening? There are times when I know something's coming on when I'm at home, and I combat it with physical activity. For example, I have dumbells and doing arm pumps increases my heartrate and breathing and then I calm down from that "naturally"; other times, I've had the feeling that I need to jog, like I'm running to escape a seizure. I thought maybe it was because I had adrenaline in my system and needed to physiologically match it......none of this probably makes sense. I don't understand it myself lol Anyway, any ideas? When I'm sitting there in the car and feeling dizzy and/or shaky, I don't really want to get out and run around in circles since I just finished all that! I need to figure out a way to cool down ( I do stretch out before leaving; and I used to even change when I was done. While I might've been a little dizzy while changing, it was always worse in the car when I was just sitting there) that prevents this rebound effect. Thanks!

The swallowing process is actually quite complex, and things can be "wrong" at different levels. I have had numerous bouts with swallowing difficulties over the past 9 ys and, strangely enough, involving at least two different levels (so different reasons?)! They were both diagnosed with barium swallows, btw, which is no big deal and maybe worth the effort. I had early bouts of food getting stuck at the back of the throat and I had difficulty swallowing-I needed both gravity (tilting my head back) and liquid to push it down. That happened when I was having my worst neurological problems (and was even hospitalized); they thought I had MS initially (no data to support that, tho). Over the last few years, I was experiencing periodic intense upper chest pain and then realized I think pills were getting stuck in my esophagus; and feeling like there was a lump in my neck/esophagus. They wanted me to have an upper scope, but then it resolved so I skipped it. At a GI appt recently for another reason, I'd mentioned it was happening again and I was burping a lot-an annoyance but they wanted to do testing. I agreed to the mod barium swallow, thinking it was a waste of time because I wasn't right then and there having pain. BUT they did! I did an intake of solids to liquids, burping up while trying to drink the liquids. Apparently, there's a flap in the upper esophagus (so sorry don't have the name in front of me) that flips back and forth covering the trachea when you swallow. The liquids don't quite trigger the flap closure, or it's sluggish, so liquid catches and backs up when I drink, making me burp and/or choke; worse case scenario is I could aspirate liquid into my lungs (resulting in increased risk of pneumonia). They couldn't tell me WHY this is happening; I see my neuro next month and will ask, tho, cuz I'm still burping with liquids. They did say they usually don't see something like that in a 40yo; more like 70-80yo..... And get this.....my MOM has this exact problem! Except she chokes/coughs all the time, and my dad is always beating her on the back for it (trying to help lol). Yup, genetic weirdos. If it gets to be a problem, one solution is to thicken all liquids (idea being that the thicker it is, the better at triggering the flap closure). So, long way of saying that "trouble swallowing" may happen from the back of the throat, where there might be sluggish response to sending food down; there might be problems along the esophagus (with solids or liquids).

Thank you for the replies. You'd think I would've thought of that, but I didn't which is why this board is helpful No, the cardio didn't take multiple measures. In hindsite, I'm even more frustrated. I guess because ds complained of the intense pain accompanied by the tachycardia, maybe that signaled to her to look out for arrhythmias.....but since the nurse and doc's offices were concerned about the tachycardia, I wish the holter monitor had done a better job of addressing that. I do have a home bp/pulse monitor, so I can test him myself sitting/standing. Good idea. In fact, this reminds me of the time I went to the cardiologist to look into dysautonomia. He put me on a multi-week monitor. I thought it would be a good idea to test out my hypothesis that I could provoke an "episode" by not drinking my 2x electrolyte water while I exercised. Sure enough, I almost ended up in the ER. Dh had to meet me in the parking lot with salt and water and sit with me until I calmed down from a violent shaking episode. I called the nurse to find out if they'd gotten the "call in" on the holter; she cheerily told me it was "normal, no arrhythmias!". Omg, I was so mad. If the holter monitor is only good for arrhythmias, then that's NOT what I needed and I'd risked my health for nothing. (well, cardio said it caught tachycardia and I should salt load, doh)

status epilepticus (unconscious, repeating seizures). The neuros never did figure out a cause, even though I was inpatient for 4 days (and this, only a month after a 6day stay). I underwent a lot of testing, and docs never found an area of instability. I suspect, in hindsite (that was 9 ys ago), that the seizures were probably secondary (to dysautonomia?).

I've been trying to research online tachycardia in children, but feel frustrated by the vague definition, which is that "normal" is anywhere between 60-100 bpm (with kids under 11 being up to 130 as normal). That seems like a HUGE range. So I thought to ask here for help. Starting a few weeks ago, my son started complaining about the feeling that his heart was racing. It was the middle of the night, so we blew it off, thinking it was either from a nightmare or the fever he had. A few days later, the school nurse called. Ds, who is almost 12, said that while at recess, he'd experienced a sudden feeling like he'd been kicked in the chest with a soccer ball. Hard to breath, intense pain. Back in the classroom, his heart was racing so he went to the nurse. For like 30 minutes, while lying there, it continued to remain between 118 and 105. Took him straight to the doc's office, and his hr was still over 100 (so this was at minimum, over an hour of this). She sent us for an EKG; by two hours later, at the EKG, it was finally ~80. Still, they had us follow up with a cardiologist. Cardio did a full work-up and concluded that his heart is structurally fine. He had a 24hr holter monitor with no arhythmias, with an average of like 88 (and this included a full-night's sleep, so did NOT make me feel any better and, in truth, made me suspicious that it was a complete waste of time if it didn't differentiate any "tachycardia episodes"!!!) His heartrate, lying on the bed, was 100 and he didn't even notice, which makes me wonder how often his heartrate is elevated and he's unaware. She suggested he go back to famdoc for testing, which we're doing (thyroid, or something else maybe). In filing away a report, I noticed that a previous doc report from Jan said his pulse was 97, bp 116/73. (in contrast, a doc report from 2008 was bp 86/60 pulse 88) Is this strange? He's also recently had constipation and bleeding (cause and effect, docs aren't sure; we're still watching that). He's only reported one other episode of chest pain (in the car); he had a headache at school and didn't feel well, but his pulse was 80 (per school nurse, who didn't take his bp...doh). Any thoughts? I want to do my own research to know what's normal and what's not. Any thoughts, or directions to send me to do more reading/thinking? Thank you for any and all help! For me, spells of tachycardia come and go (I'm more the low bp/postural hypotension type, but there are periods of time when my heart will race instead; I'm HOPING that ds does not already have some dysautonomic problems!!)

I am going back through the last 9 ys of health history, trying to summarize in preparation for a trip to Cleveland Clinic (yippee!), and realized that I actually do have results from one of my two lumbar punctures. (It's amazing how I always notice new details each time I go back over everything!). At the time, the main concern (and reason for the two lp) was MS, so even though they said the lp was "normal", I'm not sure if the entire thing was (looking at it now) or if they simply meant that it ruled out MS (which it did). So I'd really appreciate it if anyone else had CSF values to compare with and/or input on interpretation and norms. The CSF sample was colorless and clear (good!), and negative for xanthchromia; also, negative for RBC. BUT the WBC count was "8" (the sheet states that norm range is 010/cumm, but I saw 0-3 in one online ref fwiw; usually, my wbc from my arm runs on the low side, too), with a makeup of 100% lymphs. (no norm listed). edited based on later report of data: The *serum* glucose was *high* at 160 (norm 70-110), CSF glucose being 89. Also, there's an IgG measure of 1109 (norm 694-1618 mg/dl). I just found a comment that protein was "normal at 46". There's no mention of the banding/lack of banding of the proteins, but I was told that it wasn't positive for MS because it lacked the banding.... Nothing since then supports MS, but I AM wondering about inflammatory processes and wonder if the WBC and/or glucose results are significant for anything. Any thoughts? Thanks! Sorry, I know this may not be specifically related to dysautonomia, but I also know that many people here have had MS ruled out (because, like me, of having both central and peripheral NS symptoms), so was hoping some of you might have data and/or knowledge to share with me. Thank you!!!

Thanks for the quick feedback! It sounds like sometimes it's okay and sometimes it's not.....but that anti-nausea meds help and propofol sounds like a possible option. And that it's possible to do without any at all, if I can tough it out (er.....!). The doc does want a barium swallow before I go in for the endo/colono, which is fine. I actually had that done in the hospital 9 ys ago (when swallow probs first started, and it was abnormal. Since I've lived a long time with it coming and going, you can understand why it's not a high priority). And, fwiw, when I said I was "half way to 50", I meant that I'm 45 (obviously, cognitive function is already going...). Thanks!

I don't know much about the different anesthesias used for putting dysautonomia patients under for procedures, so I could really use some advice. My only experience that even comes close was at the dentist's office for root canals.....and it was a near-disastrous experience during which I learned that I *cannot* be given the numbing agent that contains epinephrine!! I thought I was going to have a seizure right there in the chair (since then, they only use the stuff without epinephrine, which of course doesn't last through the entire procedure). A year ago, a GI doc wanted to do an upper endoscopy to see why I had swallowing problems. When the problems went away (because most of my problems come and go), I canceled. I was nervous about being put under, and it didn't seem worth the risk. Well....went back to a GI yesterday for a gastro problem, and mentioned the last time I'd seen a GI doc (trying to share my health history, NOT complain about swallowing problems which, in my world, is but a minor annoyance, really).....but the doc decided he wants me to get both an upper endocscopy and a colonoscopy! Upside I can see is that they'd both be done at the same time so "what the heck", BUT huge downside is that I'm scared to death of the risks of going under with my health problems. The nurse confirmed that I would have to have it done at a hospital, not that that makes me feel any better (if anything, confirms my concerns!). I'm an alphabet soup of medical diagnoses, as most of us are....with the main ones being seizure disorder, adrenal insufficiency, and dysautonomia. The doctor said they use propofol here; my research on the internet said there are numerous choices for anesthesias. Any suggestions about drugs to further look into would be appreciated. I'm still not sure I will even consent to the procedures (if I can avoid a full colonoscopy-although I have a family history of c.cancer, and am half-way to 50, so it's probably in my future if not now-I think I'd rather continue skipping the endoscopy and continue to not worry about the swallowing problem, thereby avoiding being put under right now). (and it's not that I'm NOT concerned about swallowing problems but, rather, that I'd assumed it was neurological in nature and therefore not something that would be helped by a very invasive test such as an endoscopy. I could be wrong, though, which is the ONLY reason I didn't flat out say no again. But, also, it's not something that affects me In The Moment-which I'm sure the nurse didn't get- as much as dizzy spells and crashes....and I'm trying to prioritize and focus on the most immediate needs) Thanks for thoughts!

A few thoughts.....one is that, for whatever reason, I have more problems at night with re to heart racing. I have found that on particularly bad nights, even trying to lie down on my pillow will get my heartrate going. On these nights, I sleep with my head up, raised by several pillows. When it's really bad, I sleep on my back almost sitting up. When I can (because I hate sleeping on my back), I will sleep on my side but using two pillows (arranged to make a kind of ramp, if that makes sense; I've also seen actual pillow "wedges" available on the internet) so that my head is up as much as I can get it without being uncomfortably bent. Second....along with what Hope said about the monthly cycle, I JUST realized that progesterone may be exacerbating (or even causing) the heart racing. Because of a long side-story, my famdoc and Gyn agreed I should go on progesterone mini-pill (which I'd been on in the past, years ago, successfully). I started on Sunday, and Sunday night experienced heart arrhythmias, and heart racing all night. Monday, I experienced severe dizziness (and accompanying numbness in my fingers, etc) all day; heart racing and arrhythmias all night. My docs both told me to go off it. And I slowly recovered (not right away, but symptoms lessened daily) over the past week. Thinking about it, I realized that my worst times for experiencing nocturnal heart racing would map to the time when my progesterone is peaking (after ovulation, before my period). The third thought.....which is based on advice I received from here......was to do some kind of activity (to burn off excess adrenaline?) to naturally get my heart up. I have a set of arm weights next to my bed. When I wake up like that, I get out of bed and do under-arm pumps with the weights (arms down and back; bend arms and straighten, pushing as far back and up as I can) until my heart is racing from the effort. When I get back into bed, my heart is racing but I find I'm much calmer and the reduction in heartrate is a sleepy/relaxing feeling rather than scary feeling (if that makes sense). Good luck!

I know what you mean! Both physically, as in "in the moment" but also I have greater health problems overall during cold weather (cold stress taxing my system? I'm not talking colds and such. I mean neurological, etc). Someone encouraged me to monitor my body temperature multiple times a day to see how much it fluctuates. I just started, but noticed something interesting yesterday when I was freezing. My temp, which normally runs between 97.3 to 97.6 (trending lower in the am, higher in the pm, as it should), was below 97 (and it was evening).....ie, super low for me. This would make sense to me, though, if my body isn't warming me up enough to keep up with the cold temps around me (like TLC's mom, if it's below 75 in the house and I'm even a little bit stressed, I'm shaking from the cold), my body temp would reflect that. I'm going to make sure to take my temp when I'm feeling like that to see if that holds true. Fwiw, I climbed into my pre-heated bed and stayed there the rest of the night! It took a bit for me to warm up, but then I was okay.

Oh, wow, I can so relate to many of the things you said! It sounds like there's multiple issues involved, and I've btdt, too. 1) The partner issue: being a partner of someone with mental/physical issues is a challenge, and one that men don't necessarily come equipped to handle. In fact, my understanding (over years of hearing about it lol) is that they feel Responsible, so having someone so needy (not our fault; not saying it is!) can throw them. It makes them feel inadequate, overwhelmed, all those feelings. A long time ago, my dh attended a men's support group and he learned a lot about how to stand by my side without feeling overwhelmed himself. It's a learning process, and not all men are capable of making the mental adjustment. So in that sense, maybe you just learned he can't; or you will be able to work with him on helping him learn how. My dh STILL feels helpless a lot, and still feels angry FOR me at my predicament, but he's better able to handle and separate his feelings from our relationship, if that makes sense. 2) Your partner's family: whoo, have I btdt, too! And it's an awful experience, having his family piling on him (and you). A couple points: at some point, men have to learn to separate their family's opinions from his own (and to protect you as a couple from them), but that takes time. It sounds like you were still in the early, and vulnerable, stage. Couple therapy, to help unite you as a couple separate from your individual family units, would strengthen you. Anyway, another thing that can (and probably did) happen is that the family prioritizes HIS needs over yours. From my own experience (of over 20ys), this was because my MIL is selfish, but whatever. When my head first "blew up" (after about ten years of marriage), I was bedridden for weeks and we didn't know what was going on except that it was serious. One day we were all in the kitchen (both his mom and my mom were in town to help with my kids) and my MIL went on about what my poor dh was going through (meaning that *I* was putting him through, and we all needed to feel sorry for him). I did NOT need to hear what a burden I was at that moment, when I was afraid I was going to die..... but she was thinking only of her son. And he could've easily internalized that and blamed me.... 3) Your health.....dang, we learn as we go!! We're not perfect, and we can't always predict how our bodies will handle situations. It's unfortunate you were blamed for the crisis. I know I've made mistakes, thinking I could handle situations and then realizing I'd "overdone" it. I, too, blacked out at my wedding (before I understood my health). I've also pushed myself too hard and ended up getting the all-over body shakes when I should've known better (and yes, my dh was mad at me). I also simply error. But we learn as we go, and hopefully the people in our life support our being imperfect.....! {{hugs}}

I experience this. And had it multiple times last night, which is why I'm back on the computer researching today! I have a blood pressure monitor, so I've tried a few times to check it right after these events (but it's hard because it's dark, I don't want to move much so I don't compromise the result, and I'm often confused and shaky), but it's always taken me a few minutes to set it up. Still, last night's result that I obtained was consistent with before, which is that my blood pressure is low (85/59), my pulse pressure is very low, and my heartrate is very high. According to wikipedia, a low pulse pressure can be indicative of shock (or congestive heart failure). My working hypothesis is that my body is sensing a dangerous nocturnal state (low blood flow? Lack of oxygen from sleep apnea?), and *shocks* it with adrenaline, which wakes me up due to the resulting physiological response. A few times, I have actually even been aware of myself gasping as I awoke; along with the heart racing. Sometimes, it has also been accompanied by increasing nausea, head pressure, a heat flash, and then all-over body shaking. Because these often occur(ed) prior to my period, similar to my seizure history, I suspect they are related, but I don't know what's causing them. I get afraid of falling back asleep because I'm afraid I won't wake up one of these times. Still, even though they were happening last night, I couldn't keep my eyes open after one, so I'd fall asleep only to wake up again.... Two things that *sometimes* helped....sleeping elevated (so doubling up on pillows), since being horizontal seems to make things worse for me; and as someone here had mentioned a long time ago, doing something physical like lifting arm weights and getting my heart rate up naturally before getting back in bed. I don't know the reason this works-maybe works off some adrenaline, maybe increases my heartrate/bp/oxygen intake or increases arousal enough that my body doesn't shut down so much while I'm sleeping.....? I really don't know!!!! I see my neuro on Tuesday and want to ask him. Still, since these sleep episodes are random, I don't think a sleep study would be worthwhile.

I was cleaning out my bookmarks and started reading up on various health issues that I hadn't thought about in a long time.....and came across something that I hadn't previously thought of: symptoms of hyperthyroidism also sound like symptoms of crises. In fact, in wikipedia, it says that the symptoms can resemble an "overdose of adrenaline". I'm just now looking into this, so don't know much, but would be interested in knowing if others have had their thyroid hormone levels checked during a crisis. I have been hypothyroid since a teen, and on replacement hormone for decades, so the thyroid is not something I usually think about or worry about. But.....assuming I have functional thyroid tissue left, could it be "pushed" during times of stress, resulting in hyperthyroid symptoms in times of crisis? I've never had my thyroid checked during crises (like the ER); only during times of stability. Even now, I'm waiting a month to have my thyroid re-checked because of the stress of moving probably threw everything off. Just a thought. It would be interesting to have T3 levels measured during a crisis.

Do you notice a cyclical nature to your symptoms? Estrogen and progesterone can have different effects on the brain, and when they're out of whack, can cause problems. For ME, my symptoms are related to my hormones; when I track them, I always keep in mind the time of month because my symptoms/problems differ across the month. FWIW, just as an example, I went onto the progesterone-only pill (based on internet reading and groups, not, er, doctors) because I had seizures that were at the end of my cycle, when progesterone drops before estrogen (so, leaving an excitatory state of the brain, in theory). The pills helped and I stayed on them, with the doc's blessings, until I moved and a new doc demanded I go off them....and lo and behold, started having problems again. (I also had low progesterone when pregnant and had to take progesterone supplements, so this makes sense even in my Big Picture) Otoh, a cardio recently suggested I go on antidepressants in order to reduce my responsiveness to stressors. I know others here have mentioned it, too, and can explain the theory behind the idea much better. But if I am not as reactive to stressors, I won't have the adrenaline swings, etc, and will stay more even keeled physiologically. I keep thinking about it, but am scared, frankly. It sounds like there is no magic pill that everyone on this site can go on without some people (for whatever reason) having a really bad reaction to it. And, like you probably, I just don't want to Get Worse!

I've had difficulty swallowing during flare-ups, most definitely. So no, I don't think you're strange in thinking so. You could start with a neurologist, but the person who did my swallow testing was, I think, a Speech Language Pathologist in the hospital setting. Maybe you could call a few and ask if they do swallow testing. Not sure. When I was at my worst, in the midst of significant neurological problems, I had trouble swallowing: I would get the food to the back of my throat but couldn't get it down. I would have to tilt my head back with water in it and let gravity push it down. Since I ended up in the ER/hospital soon after, they just tested me there. It was by drinking some special drink (barium-laced?) and then monitoring it with some kind of xray. Yeah, I'm describing it well, huh? I've also had problems swallowing and I think it was the esophagus itself because food was getting stuck midway down. This was years later and I thought I'd been having heart problems because I was having spells of significant chest pain. Then I realized it was painful after taking my pills, when swallowing. And then dinner just *stopped* there, and that was the *lightbulb* moment. Fwiw, the family doc wanted to rule out an esophaygeal tear with an xray (fine) then sent me to a gastroenerologist, who did an exam of the other end (GAH!!!) while there (To say I was shocked and dismayed is an understatement!!!!) because he said it was important to rule out problems in the entire GI tract. Then he scheduled me for a scope from the top, which would require me to be put under, which I balked at. And since my pain resolved (and I realized that it was probably neurological, even tho the actual difficulty was in different aspects of the swallowing process....) I canceled for the scoping and haven't had problems since (9 mo ago). So.....I guess there's a couple different ways you can go, but I personally would see the neuro or a SLP for barium swallowing testing first (!).

I take 75mg lyrica in the morning and 75mg lyrica in the evening. I believe it's probably an off-label use for partial seizure control (which is what I take it for). I don't remember looking into the neurobiology behind its effectiveness, but I suppose that would make sense, since the point is to calm my hyperreactive brain down. I've been taking it for about five years; I don't remember having any problems with it in the beginning, but then again, I started taking it because I was in the midst of an increase in neurological symptoms so it would probably be hard to tease apart anything caused by the drug and things that ere ongoing at the time. It seemed to help because I stopped having breakthrough "partial seizures" (which I have described here before- are autonomic-like nocturnal episodes) at the time. When I moved and new docs changed my meds around, I started having more, so the new neuro told me to double my night-time lyrica-and I started hallucinating! It was (Murphy's Law) the weekend, and I was going around thinking I'd figured out the answers to life, the universe, and everything, and then would forget the "answers", only to again think it. Strange day and at some point I realized that I probably *shouldn't* be thinking that, and called the neuro.....and went back to my normal dose pronto!! So maybe that's how you know you're taking too much? Otoh, maybe I coulda made a side business out of my crazy lol One last "funny" note re lyrica: in some states, it's considered a controlled substance (because of its primary use for pain control). When I made a cross-country move a few years back, I thought I'd get a refill in my new state because the script was at CVS (and they can pull up records from other CVSs). I had an increase in neurological activity due to the stress of the move and needed my script filled soon after moving-and they couldn't do it!!! As a controlled substance in the new state, they couldn't fill from out-of-state. And to top it off, the pharmacist was *suspicisous* of me because he'd never heard of lyrica being used for seizure control!!! And then they wouldn't take the out-of-state doc's word for it, either! Talk about panic, which of course made things worse...... <drama> I was thinking about pain/lyrica just the other day. Pain is often a symptom of larger issues, and achiness *is* sometimes a problem for me, but I have no way of really gauging the extent of (joint) pain and/or achiness because of my lyrica. Anyway, that's my long-winded experience(s) with lyrica. I hope it can help you!

jknh9, Mine are mostly like what you describe. Only my first episode was freezing. Unmedicated (and wrongly medicated), my seizures happened in my sleep, and I was unconscious during them. On anti-seizure drugs, "breakthroughs" are more autonomic-like. They used to only happen at night, but each time I go through a serious bout of stress, my symptoms change and increase, such that know the dizziness and shaking are sometimes happening in the daytime. Anyway, didn't want you to feel alone in this. I wish I could find the link someone had shared to a youtube video of someone experiencing the all-over body shakes.

Tenille, fwiw, I haven't, either. I kinda wish they had been, as it would be nice to have that info (site of activity, etc), but in my experience, the ER purpose is to stabilize and send home. The two times I was admitted, it was because of the bigger picture of significant neurological symptomology (ie, the first time, I had a cluster of symptoms so they kept me for six days to run every test they could think of, to no avail; and for high dose solumedrol, which actually helped reduce neurological problems, although I don't think they understood why it worked; the second time, well, it was status epilepticus so they did keep me cuz I wasn't stabilized for a while, and they did four more days of testing, again to no avail). The last trip to the ER, they could stabilize me (shaking episode) with ativan, so they sent me home and told me to follow up the next week with my neuro. I wish they had done testing at the ER to figure out *right then and there* what was wrong with my system. It sure wasn't "wrong" the following week. I was upset, but I guess I understand: they don't want to overload their hospital if they can send me home. It's frustrating when symptoms come and go

Wow, that sounds awful, Hillbiligrl! I've only had *one* episode like that, and it *was* scary, so I can sympathize. Can you tell what brings them on/triggers the different kinds of episodes? My first episode was like that. I wish I could remember the exact sequence, but it was 9 ys ago, on Tgiving night. I'd had a lot of pie that evening (and at the time, I was aware that I was, to some degree, sugar sensitive as I was on a low-carb diet even back then), and stayed up late after. Went to lay down in bed, things happened, one of them being I was suddenly frozen on my back, staring at the ceiling, and couldn't move. It only lasted probably 30 seconds, though. (after that, the same night, my eye started ripping into the back of my head in 30 sec spasms, and I ended up having to go to the ER because it was so painful I was screaming). BellaMia, I do have a seizure disorder of unknown origin. After that first ER episode, and status epilepticus a month later (both right before my periods), along with MS symptoms (because I had both central and peripheral symptoms, they suspected MS as their only idea).....they finally consulted with Mayo, who said they would see me but didn't think there was anything else they could do for me that my neuros hadn't tried (because, in two short months, they'd done a LOT of testing, with no obvious answers). Initially (ie pre-medication) I had grand mal seizures (unconscious); medicated, I had what I called "breakthrough seizures" that I think of (correctly or incorrectly; doctors never said I was wrong) less severe seizures of the same origin/type. They used to always happen during the night, before my period. One time I was describing them to my mom, and she burst out with "OMG, they sound just like my panic attacks!". (needless to say, she was recently put on anti-seizure meds with much better control) But when I started thinking about that in terms of my experiences, I am positive that I am not experiencing an uncontrolled fear, like panic; rather, they are autonomic in nature. I wake up (in the middle of the night usually) with my heart racing, and then nausea and head pressure build, build, build, I feel a flash of heat that spreads, then I start shaking all over. The fear that I experience is based on the fact that I cannot stop them, and I know where it's going to go. When I got to the point of acceptance, I could sit through them without fear, but it is not pleasant, nonetheless! I used to take xanax to stop them, but in the past year, my heart felt Too Slow and I was afraid I would slip into death (enough that I made dh stay awake for a while to make sure I didn't stop breathing!) Sometimes if I don't tip over, I DO have to go to the bathroom (diahrrea, sorry for TMI), tho, too, another suggestion that ANS may be involved. After reading suggestions here, I have found that ways to reduce the likelihood of tipping into the body shaking: I use hand pumps and pump until my heart is beating fast naturally and then let it slow down. I sit up in bed or in a chair when I'm feeling ready to spike; for some reason, laying down makes my heart race and increases the likelihood of it starting up again. I wish I knew what caused them. The dizzy/shaking episodes have become more frequent in the past year, and now interrupt my daytime. If you have any ideas what spikes seizures of an ANS nature, I'd be interested in hearing! I know that I can't have the epi shot at the dentist because that almost set off a seizure......

I'm hesitant to reply, because I don't know if Ramakentesh was talking about my post being irrelevant and questionable....but I try to offer when I can, and certainly people are free to ignore my thoughts and experiences if they want to! So my apologies for taking up your time if this isn't applicable, and he's right, it is not about POTS, but is in response to Bear's Mommy's post...... what she wrote about severe blood loss and significant symptoms following that experience made me think of something I read about recently (but know nothing about, other than that!): Sheehan's syndrome. It may be worth reading up and seeing if anything fits.....

Lissy, my neurological problems (most obvious "start", tho I'd had non-limiting problems for years beforehand) started when my hormones kicked back in fulltime after my second son, too. I've heard that from another woman, as well; I'm sure it's a real phenomenon. It makes sense. When the brain is deprived of chemicals for a long period of time, a common response is to upregulate....and then, suddenly, the hormones turn back on and Whammo. I'm sure that, for me, it was a Perfect Storm at the time. As for your cold, one hypothesis....is that there's something in your environment that you're allergic to, and most of the time your body is capable of suppressing the response (like via cortisol, which has anti-inflammatory effects) but during a specific time of the month, your cortisol (or HPA) is decreased, and you get a hyper-response, resulting in inflammation. Depends on your cold symptoms, tho, if my hypothesis fits lol But the reason I thought this is that I have had bouts of bad to Really Horrific "bronchitis" that I now know I can halt the progression of by simply increasing my cortisol levels (by doubling my cortef dose) when I feel my chest starting to get heavy. It happened every Fall when I lived in the Midwest. Have you been checked for adrenal dysfunction? Very, very few doctors know how to test and/or interpret the results properly (and to make it worse, many labs don't even know hot to do the labwork properly!), but many of the symptoms of dysautonomia overlap with hypothalamic-pituitary-adrenal axis dysfunction. I was put on cortef 9 ys ago for adrenal insufficiency after testing, and felt so much better that I didn't question it; until lately when I was feeling worse (with more symptoms that also fit with dysautonomia, which is why I ended up here). Now it looks like my diagnosis may actually be higher up the food chain, ie at the level of the pituitary. But whatever. If you do see an endocrinologist for this, make SURE you ask and ask and ask for a doctor who specializes in this (most endos specialize in diabetes, maybe thyroid.....).

You might find the wikipedia entry on "catamenial epilepsy" informative. "Catamenial" is related to menstrual cycle hormones, and the website has good information on hormone fluctuations throughout the month, and how the different imbalances can affect health. I have catamenial epilepsy, which is how I first learned about this. I consider my symptoms in terms of monthly chunks, because they vary over time (as in Big Picture, across the years). For example, my symptoms during ovulation sometimes consist of joint pain and feverish feeling, and difficulty urinating; whereas my symptoms before my period are overactive head and hyper startle (and stress-induced shakes are MUCH more likely; I can't handle stress at all during this time); I've had trouble swallowing and chest pain infrequently but during the early part of my cycle before ovulation, too... But again, I think of it as a month-by-month issue, so I "re-start" my mental checklist at the beginning of each cycle.